People with spinal cord injury face multiple barriers to physical fitness in functional, psychological, and architectural domains. Identification of these barriers can facilitate the participation of individuals with spinal cord injury in an exercise program, improving long-term health and wellness.
Study design: Review by the spinal cord outcomes partnership endeavor (SCOPE), which is a broadbased international consortium of scientists and clinical researchers representing academic institutions, industry, government agencies, not-for-profit organizations and foundations. Objectives: Assessment of current and evolving tools for evaluating human spinal cord injury (SCI) outcomes for both clinical diagnosis and clinical research studies. Methods: a framework for the appraisal of evidence of metric properties was used to examine outcome tools or tests for accuracy, sensitivity, reliability and validity for human SCI. Results: Imaging, neurological, functional, autonomic, sexual health, bladder/bowel, pain and psychosocial tools were evaluated. Several specific tools for human SCI studies have or are being developed to allow the more accurate determination for a clinically meaningful benefit (improvement in functional outcome or quality of life) being achieved as a result of a therapeutic intervention. Conclusion: Significant progress has been made, but further validation studies are required to identify the most appropriate tools for specific targets in a human SCI study or clinical trial.
Context/ObjectiveThe Spinal Cord Injury – Quality of Life (SCI-QOL) measurement system was developed to address the shortage of relevant and psychometrically sound patient reported outcome (PRO) measures available for clinical care and research in spinal cord injury (SCI) rehabilitation. Using a computer adaptive testing (CAT) approach, the SCI-QOL builds on the Patient Reported Outcomes Measurement Information System (PROMIS) and the Quality of Life in Neurological Disorders (Neuro-QOL) initiative. This initial manuscript introduces the background and development of the SCI-QOL measurement system. Greater detail is presented in the additional manuscripts of this special issue.DesignClassical and contemporary test development methodologies were employed. Qualitative input was obtained from individuals with SCI and clinicians through interviews, focus groups, and cognitive debriefing. Item pools were field tested in a multi-site sample (n = 877) and calibrated using item response theory methods. Initial reliability and validity testing was performed in a new sample of individuals with traumatic SCI (n = 245).SettingFive Model SCI System centers and one Department of Veterans Affairs Medical Center across the United States.ParticipantsAdults with traumatic SCI.Interventionsn/aOutcome Measuresn/aResultsThe SCI-QOL consists of 19 item banks, including the SCI-Functional Index banks, and 3 fixed-length scales measuring physical, emotional, and social aspects of health-related QOL (HRQOL).ConclusionThe SCI-QOL measurement system consists of psychometrically sound measures for individuals with SCI. The manuscripts in this special issue provide evidence of the reliability and initial validity of this measurement system. The SCI-QOL also links to other measures designed for a general medical population.
Background/Objective: Depression has been studied extensively among people with spinal cord injury (SCI). However, basic questions persist regarding the reliability and validity of depression measurement in the context of SCI. The objective of this study was to evaluate the state of knowledge of depression measurement in persons with SCI. Methods: English-language peer-reviewed citations from MEDLINE, CINAHL, PsycINFO, ProQuest, Google Scholar, and Web of Science from 1980 to present. Two reviewers screened 377 abstracts on SCI and depression topics to identify 144 containing classifiable psychometric data. All 144 were reviewed by 6 reviewers. Twenty-four studies reporting psychometric data on 7 depression measures in SCI samples were identified, including 7 validity studies. Results: Reliability data were limited to internal consistency and were consistently good to excellent across 19 studies. Validity data were limited to concurrent validity, construct validity, and/or clinical utility in 10 studies. Measures were comparable with respect to internal consistency, factor structure, and clinical utility. Results are limited to peer-reviewed, English literature, and studies were not judged for quality. Conclusions: Greater attention should be paid to the psychometric evaluation of established measures. Although existing evidence may not justify universal screening, we recommend depression screening in clinical practice when patients may be seen by nonpsychology personnel. There is insufficient evidence to recommend one screening measure over another. Therefore, selection of measures will depend on clinician preferences. Psychometric studies are needed to show test-retest reliability, criterion validity, and sensitivity to change to improve depression recognition and treatment.
Context/objective: Examine the relationship of post-traumatic psychological growth (PTG), depression, and personal and injury characteristics in persons with spinal cord injury (SCI). Design: Cross-sectional survey. Setting: Community. Participants: Eight hundred and twenty-four adults with SCI. Interventions: None. Outcome measures: Five items from the Post-traumatic Growth Inventory, reflecting positive change after injury in life priorities, closeness to others, new opportunities being available, stronger faith, and personal strength. Results: Initial structural equation model testing of a conceptual model of personal and injury characteristics, violent etiology, depression, and PTG resulted in a poor fit. Model modifications resulted in an improved fit, but explained only 5% of the variance in PTG. Being female, younger, having less formal education, and less time since injury had significant relationships with PTG, whereas depression, violent etiology, and injury level/severity did not. In each PTG domain, between 54 and 79% of the sample reported at least some positive change after injury. Conclusions: The results of this study, while promising, explained only a small portion of the variance in PTG. A majority of the sample experienced some positive change after injury, with the greatest change in discovering that they were stronger than they thought they were. Comparing means previously reported in a non-SCI sample of those who experienced trauma, positive change after injury was comparable for each PTG item except for new opportunities being available, which was significantly lower for those with SCI. Future directions of research include the development of theoretical models of PTG after SCI.
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